A little background story.....Part 3

My first appointment with my Endocrinologist was on Feb 1, 2012.  I was actually so excited...I was finally going to get some answers.  I was going to be sitting across from a lady that was going to hold the key to me health.

My husband went with me...he wanted answers as much as I did.  She did tons of blood tests and told me I would probably need to start thyroid medicine when she got my results back.  My thyroid was mildly enlarged, but the antibodies weren't as high as they should be to have Hashimotos.  Luckily for me I had an ultrasound of my thyroid not long before I came to see her and she was able to look at and tell I had Hashimotos, even though blood tests weren't telling that story.

She put me on a low dose of Synthroid, even though my TSH was perfect, to see if it would help the hives.  It didn't.  They upped the does...nothing.  The only thing that truly helped me was ADVIL!  That is right...I said ADVIL.  Within an hour of taking it the hives would be gone.  I was taking at least 1600 mg per day if not more, but I was hive free.  None of my doctors could explain it...not one!

Over the next several months the advil sustained me while I searched for answers.  More doctors....I think I saw about a total of 9.  Finally I got so frustrated and discouraged that I decided I would go to every kind of doctor there was until someone found my cure.  At this point I had officially been diagnosed with autoimmune urticaria and Hashimotos (autoimmune thyroid disease).  I called my allergist and told them I wanted to be referred to infectious disease, so she did it.

When I went to the infectious disease doctor he pretty much told me up front there was nothing he could do, but he would run some blood tests just to be sure.  This man ran so many tests...the main thing he was looking at was Lupus.  Although, he did run a test for AIDS.  Do you know what it is like to wait for a results for an AIDS test?  Even though I knew there was 99.9% no way I could have it....it was still terrifying.  The lupus test actually came back positive.  Adding another autoimmune test to my list.....see where this is going?  The infectious disease doc sent me back to my allergist and we finally had answers...just not what you are thinking...it wasn't LUPUS!

I went back to see Dr Merritt (allergist) and it was like a light switch went off for her.  My thyroid was very enlarged and I had all these autoimmune problems.  She contacted her mentor, an old retired doc who lives about 4 hours from me.  He held all the answers...I was having a complement cascade and it was all stemming from my thyroid.  My thyroid was trying to kill me!

 It was time to take it out!  Which brings me to Aug 14, 2012.  The day I started to feel better!

A Little Background Story....Part 2

I was all clear for a couple months.  Still exhausted quite a bit especially after work, but I just kept right on trucking.  Then wham I woke up one morning and both arms were covered.  I cried..yep you got that right....I cried!  The amount of frustration that was in my body exploded all over the place that morning in the form of tears.

I called Dr Merritt and they got me in within a couple hours.  She said I had the exact same thing I just caught it earlier.  I was put back on Biaxin and told that I may need see an infectious disease doctor.  The Biaxin once again cleared up the hives on my arms, but now I just had a few here and there.  I kept taking the medicine hoping it would clear, but never did.

Here I was entering the new year a medical mystery and having new symptoms pop up all the time.  Suddenly I went from having hives to being wiped out from the time I got up to the time I went to bed.  I ran a fever practically all the time, my muscles ached, my body hurt, and I was so moody.  My hives hurt...yes they physically hurt.  They itched when they came on, but once they were there they hurt.

Dr Merritt ran allergy tests and really could find nothing, but still thought it was an allergy.  My savoir was turning against me...allergies?!?  This was not a stinking allergy.  I know now she was just as stumped as everyone else and she really did want to help, but was just at a loss.  I decided to take matters into my own hands.

I started looking for answers everywhere.  I spent hours on the internet.  The hours that I knew a doctor could not give my case specifically I gave to myself.  If there is one thing I have learned it is to be your own advocate.  Only you truly know your body.  This is where I found my answer...in the comments section.  I called my MD and told him I wanted him to order an Antithyroid peroxidase antibody and a Antithyroglobulin antibody test and he did.  It was in that one test I got a ray of hope.  My antithyroglobulin antibodies were high.  Not out of this world high...not even suspicious high in terms of a blood test, but to me it meant something.  My level was suppose to be 20 or below and mine was 28. This meant I had Hashimoto's, an autoimmune disease where the body attacks the thyroid, at least to me it did I had to wait for confirmation.  My MD told me that he would refer me to an Endocrinologist because this might be the root of my problem...thank the lord someone else thought the way I did.

Do you know how long it takes to get into an Endocrinologist?  Months...that is how long!  I called my Endocrinologist everyday to get into a cancellation spot.  During the mean time I saw a Rheumatologist who told me an endocrinologist was going to be my best bet...well that's fabulous if I could get into one.  I then saw a dermatologist who to told me I needed to see an Endo doc and put me on lots of meds to try and help til I could get in...to bad they didn't work.  I will say though the dermatologist pushed for me to get into the Endocrinologist and I finally got an appt.

Up Next:  A Little Background Story...Part 3

A Little Background Story....Part 1

My journey began a year or so ago.  The doctors tell me it actually probably began many years before that, but I just didn't really realize it.

I had my thyroid removed on Tuesday Aug 14th, 2012.  One week before my sweet baby girl started 1st grade.  I had been on a roller coaster since Aug of 2011 and I actually thought this might be my way off.  The ride has definitely slowed some, but is no where near over.

In Aug of 2011 I started a Monday with a few tiny hives on my hand.  I'd never really had hives before, but had seen them and chalked it up to an allergy.  By Wednesday they had started to spread, so then I started to think of all the new things I had started and could only relate it to my birth control.  Needless to say I called my OB and got switched right away, but to no avail.  They just kept coming on worse and worse, so I visited by regular MD, who thought it might still be an allergy, but not a drug allergy.  I was given Allegra, Atarax(old time antihistamine also used for anxiety), and a steroid shot and started to get better.  I was all clear by Monday morning.....Thank Goodness, but it was short lived!

October 2011 rolled around and once again I found myself covered in hives.  Only this time it was head to toe.  I went to see my MD again...he had the answer or so I thought the first time.  I was told it was hay fever (we had just set up fall decorations on our porch using hay). More shots and more pills...waiting for a hard freeze.  Boy oh Boy was he wrong.  I spent the entire weekend in and out of the emergency room.  Probably had a half a dozen shots and was on four antihistamines and a steroid.  By my last visit in the ER, the night my face swelled so much I looked like I had just gotten some very bad lip injections, I was told it was just an allergy to something in my environment.  They took me off all the medicines and told me to see an allergist.  Are you freaking kidding me?!?!  That doctor (if you can call him that) was a total quack and I'd tell him if I ever see him again.  By Sunday I started to take a turn for the worse.  I was running a fever, ached so bad, so so tired, and my once enormous hives was now basically a red rash from head to toe.  My family begged me to go to a different hospital or to drive to Kansas City to my sister's hospital (she is an ER nurse) to get help.  I decided that I would stick it out until Monday and go see an allergist.  Monday came and I barely could get out of bed...I'm not really sure how I made it out of bed and got my daughter to school that day, but I did.  My husband goes to work at 6am, so he and I didn't really know how bad it was until I tried to get up.  Truthfully, I don't always like to tell him the whole story about being sick because he is somewhat a worry wort!    After calling, crying, and begging three allergists offices someone had pity on me.  Dr. Merritt or my savoir...which ever I prefer on a particular day.  She got me in at 3 that day and told be I had something very similar to scarlet fever.  Scarlet Fever....Really?!?  She gave me pain pills and Biaxin.  My Tuesday it was gone.  I mean literally within 12-18 hours it was all gone.  I was still a little run down, but I didn't feel like I was going to die.  Thank the lord they figured out what was wrong with me!!!

Up next.....A Little Background Story Part 2